Significant progress has been made in several states where NHF has been working with local chapters, associations and other allies to promote legislation that would help protect access to high-quality care for people with bleeding disorders. At the 2007 Washington Days, NHF formally launched the Bleeding Disorders Advisory Board Campaign. Supporting the grassroots efforts of local chapters and other key stakeholder groups, the goal is to establish state-recognized bodies of consumer representatives and medical experts that can advise decision-makers about issues affecting the bleeding disorders community and ensure that access to care is maintained. The campaign kicked off with efforts in Iowa, Texas and Massachusetts.
Legislation establishing an advisory board bill has already passed unanimously in the Iowa State Legislature. In early April, Iowa Governor Chet Culver signed the bill into law at a ceremony attended by representatives of NHF, Hemophilia of Iowa (the local association) and other supporters. In Texas, a similar bill passed the Senate Health and Human Services Committee by a unanimous vote of 7-0. The bill is expected to come up for consideration by the full Senate soon. Additionally, in Massachusetts, the House Public Health Committee has set a hearing date of June 13 for its state’s advisory board bill.
Other initiatives protecting access to care are also making headway. On April 17, a bill was introduced in the House of Representatives of the Pennsylvania General Assembly establishing “Hemophilia Standards of Care.” The bill seeks to preserve access to all FDA-approved clotting factor products, to the eight state-recognized hemophilia treatment centers (HTCs), to clinical coagulation laboratories associated with the HTCs, and to full-service homecare pharmacies, including those providing home nursing care for those who need it. The legislation also mandates screenings for von Willebrand disease and other bleeding disorders for women before undergoing certain surgical procedures, including a hysterectomy. The Delaware Valley and Western Pennsylvania Chapters of NHF, both of which are advocating for the legislation, gathered more than 200 community members and supporters in Harrisburg, the state capitol, on the day the legislation was introduced. NHF representatives joined local activists in asking legislators to support this important bill. Currently, New Jersey is the only state with comprehensive, legislated standards of care for people with bleeding disorders.
NHF is reaching out to chapters and associations that want to advocate for advisory boards and standards of care throughout the country. For more information on the program, please contact Ruthlyn Noel, NHF Manager of Public Policy: 212.328.3730 or e-mail firstname.lastname@example.org.